Sunday, March 26, 2017

A few weeks ago, British author Dan Jones contacted me and
asked if I’d be interested in reviewing the recently released second edition of
his book Look Into My Eyes. In his email, he explained that he had written an
autobiography last year describing growing up with Asperger’s syndrome. In the
second edition, he decided to include helpful tips based upon his experiences
as well as a chapter written by his wife explaining what it’s like to be
married to someone with Asperger’s. Since I am fascinated to learn more about
the perspective of those on the autism spectrum, I was pleased to accept Dan’s
offer to share his book with me and to share my impressions of his writing.

Now in his late 30’s, Dan Jones was not diagnosed with
Asperger’s until he was a young adult. After being diagnosed, he has worked
with children of all ages on the autism spectrum and their families. Because of
his experience with having Asperger’s and his ability to articulate his
experiences, he is able to help children with autism and their families so that
they can better understand traits commonly found in autism. He explains that
the purpose of writing his book is to give hope to parents of children with Asperger’s
syndrome and to people with Asperger’s syndrome. Moreover, he finds that
writing helps him understand himself better. For him, writing is ideal because
he can learn new things, share knowledge, and spend time alone––all of which
are important to him.

While the book is primarily organized chronologically, going
from his early childhood to adulthood, at times he repeats ideas and seems to
ramble from one idea to another. He himself recognizes this quality, noting
that his mind works this way. Consequently, his writing allows the reader to
see how the mind works in Asperger’s syndrome. For the neuro-typical reader,
his writing has a conversational feel that often flows in a stream of
consciousness, and the movement from one idea to another is quite interesting.
While he does repeat certain concepts throughout the book, he ties these ideas
to various stages in his life and explains their significance clearly. Having
lived with a child on the autism spectrum, I found these repeated references
familiar and understood Dan’s need to make points evident through repetition.
Furthermore, I was amazed by how detailed his descriptions are in relating incidents from his
childhood, making them quite vivid for the reader.

Throughout the book, Dan describes the difficulties of
dealing with sensory overload and social skills, which are common obstacles in
autism. For example, he clearly explains the overwhelming sensory issues caused
by the irritation of clothes, “busy noises,” “uncomfortably bright” sights, and
“so much to try to focus on and keep track of.” As a child, he preferred adults
to peers, who bullied him. He notes that he gravitates toward those who share
interests with him, but he finds making friends difficult. He states, “I have
never been good at making and keeping friends because I have no interest in
making and keeping friends.” Moreover, he describes that as a child, “I was
happy to sit alone in a corner somewhere; I didn’t feel a need to seek out the
company of others.” As a parent, I have wondered whether Alex feels lonely not
having peer friends, but if he shares Dan’s perspective, he may not care about
having friends and may prefer his own company anyway.

In reading Dan’s description of his childhood, I found many
similarities between him and Alex. For example, he describes himself as mostly
calm and quiet, but he would get upset when plans were changed; I would
describe Alex in the same way. Also, like Alex, he didn’t care whether he won
or lost games; he simply wanted to do his best and stick to the rules. In
addition, Dan describes enjoying one of Alex’s favorite things to do: imitating
sounds and voices. Like Alex, he explains that he didn’t realize imitating
people can be offensive, and he must work at not copying how people speak. Another
similarity they share is a love for learning as well as learning to read at an
early age and preferring nonfiction to fiction. I especially appreciated Dan’s
explanation of his preference for nonfiction. He explains that he doesn’t see
the point of reading something that is not real. Yet another likeness is that
Dan describes himself as a good eater, which Alex is, too. However, I found
Dan’s reasoning for being a good eater surprising. He explains that eating
gives him something to do when others are around, and he doesn’t have to interact
with them. In contrast, I think that Alex’s love of eating is not just a way to
avoid social interaction; he seems to enjoy the act of devouring food, as well.

A major focus of the book is hypnosis, one of Dan’s main
interests and the inspiration for the title of the book. When he was thirteen,
he saw a television show about hypnosis and began reading books on the topic.
He states, “I thought hypnosis might be the ultimate way of controlling the
world around me so that people left me alone when I wanted to be left alone,
and so that I didn’t have to do things I didn’t want to do.” Although he
discovered that hypnosis didn’t give him that control, he found that it helped
develop his social skills. He explains that hypnosis requires observation, copying
other people's behavior, and communication skills, all of which improved his rapport
with others. In addition, he was able to develop eye contact, which is often
difficult for people with autism, learning to look through and past people when
he could not look directly at them.

In this second edition of the book, he has included a
chapter written by his wife, Abbie, whom he credits with helping him make
positive changes, by encouraging him to be more emotional and to socialize with
others. She describes dealing with his bluntness and his obsessions, but notes
that they have built a strong relationship. This second edition also offers
comprehensive tips and strategies for people with Asperger’s as well as their
families, friends, and teachers. He emphasizes the need for developing social
skills and using relaxation techniques and offers practical tips for coping
with daily life. Moreover, he explains that people with Asperger’s need
routines, structure, consistency, and support. In addition, he encourages people
with Asperger’s to communicate their needs, such as asking for help.

Dan Jones’ second edition of Look Into My Eyes not only
provides practical advice for people with Asperger’s syndrome, but also allows
others a glimpse into the amazing mind of someone on the autism spectrum. While
the reader may be boggled at times by the vivid imagery and details Dan Jones
recollects from his life, one sees how brilliant, indeed, that mind truly is.
Moreover, one can’t help but admire and appreciate the candor the author
willingly provides in sharing his experiences in hopes of helping others. As we
look into Dan’s eyes, we hope that we might see more clearly what is behind the
eyes of those children on the autism spectrum who bless our lives with their
unique perspective.

“The Lord replied, ‘Look around at the nations, look and be
amazed! For I am doing something in your own day, something you wouldn’t
believe even if someone told you about it.” Habakkuk 1:5

Sunday, March 19, 2017

A recent study published last month in the journal Research in Autism
Spectrum Disorders reports that children with autism who have smaller brain
stems are more likely to be aggressive. [To read an article about this
research, please click here.] Under the direction of Brigham Young University
assistant professor of psychology Rebecca Lundwall, the research team studied
MRI images of two groups of children with autism: those who were highly aggressive
and those who were not.

The research team is investigating the connection between
autism and aggression in hopes of finding better intervention. Study co-author
and BYU assistant professor of school psychology Terisa Gabrielsen notes that
aggression in autism “impacts families’ quality of life so significantly.”
Moreover, she states, “If we look long-term at things that affect the family the most,
aggression is one of the most disruptive.”

The brain stem controls the flow of messages between the
brain and the rest of the body, namely basic body functions, including breathing,
heart rate, blood pressure, swallowing, and digestion. As BYU clinical
psychology Ph.D. student Kevin Stephenson notes of the connection between the
brain stem and aggression in autism, “...so this is evidence that there’s
something core and basic, this connection between aggression and autism.”

Study coauthor and BYU professor of psychology Mikle South
notes the need to discover triggers that overwhelm children with autism before
they display physical reactions, such as sweating or rapid pulse. He states,
“Some of these kids, if the brain isn’t working as efficiently, they may pass
that point of no return sooner.” He, therefore, emphasizes the need to use
behavioral interventions “early before that arousal becomes too much.”

Recognizing that the areas of the brain work together, the
research team plans to study how the brain stem works with other areas of the
brain. As team member Kevin Stephenson notes, “So if one area is disrupted, it’s
likely that other areas are disrupted, as well.” Moreover, they plan to seek
possible mechanisms linked to arousal and aggression.

This research on aggression and autism and the possible link
to the brain stem holds particular interest for me because exactly five years
ago yesterday we had to hospitalize Alex for extreme anxiety and aggressive
behavior. After desperately trying to find help for him for several months, an
especially aggressive outburst necessitated calling the police to help us
restrain him, and we knew that we had to have him placed in a
psychiatric ward for his safety and ours so that he could get the intensive help he needed to get
better.

The months leading up to the hospitalization were heartbreaking
and terrifying. Our son, who had been docile and sweet natured most of his
life, had become an angry young man, whose unpredictable behavior meant that he
could fly into a rage at any moment, physically attacking us and hurling
anything he could get his hands on. We had taken him to various professionals,
yet no one had answers. In the middle of the night, after Alex was subdued by
Ativan, I made a phone call to a hospital in the next county and found that
they would take him if we brought him to their emergency room. We headed out in
the darkness, and in the morning light, he was finally admitted to behavioral
medicine.

Without a doubt, hospitalizing Alex was the hardest decision
Ed and I ever had to make. However, we can look back on that decision and say
without a doubt it was the best decision we ever made for Alex. God had led us
precisely to the place and the people who knew how to help Alex get better.
After weeks of developing a medication plan, they were able to get under
control the anxiety that plagued Alex and made him aggressive. Their social worker guided us to resources that allowed Alex to receive support services he needed to continue coping with anxiety, such as behavioral therapy and music therapy.

Five years later, we are thankful that we regained our
sweet, docile son who can manage anxiety with proper medication and the calming
techniques he has learned in therapy. Perhaps his brain stem is smaller, making
him react differently to stresses in life. Perhaps had we known this, we would
have pursued behavioral therapy as a preventative method instead of a reactive
one. Certainly, investigating how brains of children with autism and aggression
differ is a worthwhile pursuit. However, I still believe that we had to go through
the trials we did to get to the place of peace and contentment we have now
found. God led us through the fires and brought us safely to the other side,
better and stronger than we ever thought possible.

“The Lord says, ‘I will rescue those who love me. I will
protect those who trust in my name.’” Psalm 91:14

Sunday, March 12, 2017

Ever since he was a little boy, Alex has always loved
learning, to the point we nicknamed him “Mr. Curious.” His precocious reading
skills allowed him to do his own research from the time he was a preschooler,
and he continues to show an interest in seeking knowledge by reading books and
doing Google searches online about topics of interest. If he doesn’t know
something, he will “check it out,” as he often says, not satisfied until he
finds the data he needs. Like Alex, I love doing research and reading about
topics I find interesting. After he was diagnosed with autism, most of my
reading and research focused upon autism, not only because I found it
interesting, but also because I wanted to understand how Alex thinks and
behaves and to find ways to help him.

An article published online this week entitled “Autism And
The Drive To Explain And Explore” caught my attention as it deals with how
children with autism are motivated to learn. In this commentary, psychology
professor Tania Lombrozo summarizes research published by M.D. Rutherford and
Francys Subiaul last year in the journal Autism. [To read this article, please
click here.] This research focused upon how children with autism differ in how
they learn as compared to typical children. While all of the children they
tested had the same mental age, the children with autism ranged in
chronological age from 3-10, whereas the children who did not have autism were
four years old.

One experiment involved a physical task in which children
had to turn wooden blocks with pictures of dogs on them so that the dogs were
standing up. One of the blocks was weighted and would not stand properly.
Researchers observed the children’s reaction to this problem to see if they
would try to figure out what was wrong with the block by studying the block or
touching the table or by asking the adult for help or an explanation of why the
block wouldn’t balance. The children with autism were much more likely to
engage in “exploratory and explanatory” behaviors than the typical children,
touching the table, asking “why” questions, and providing explanations
regarding the problem block.

In another experiment, children were given a social task in
which they asked an adult for a sticker by holding out their hands. After a
while, the adult ignored their requests to see what the children would do.
While the typical children repeated the hand gesture, looked at the sticker or
the adult’s face, or tried to get the adult’s attention, the children with
autism were less likely to engage in these behaviors. The researchers concluded
that in this social task, children with autism did not have an increased
“drive to explore or explain.” The researchers suggested that children with
autism may have increased drive to explore and explain in some realms but not
in the social domain.

The author of the article wisely notes that this research
regarding the ways children with autism try to find explanations is new; therefore,
drawing conclusions may be premature. Specifically, were the children with
autism less interested in the social task, or did they possess the same
motivation as the typical children but lacked the skills needed to engage in
the social task? However, this research describing children’s “explanatory
drive,” or the motivation to explain confusing circumstances, concludes that “children
with autism have an exceptional explanatory drive” in physical context but not
in social context.

As a teacher and the parent of a child with autism, I
question the conclusions the researchers of this study made. Living with “Mr.
Curious,” I have seen that “exceptional explanatory drive,” where Alex
scientifically studies physical phenomena, trying to make sense of them. If he
cannot figure out something by observation, he will ask us questions and/or
find a book or an online source to satisfy his need to know. Had he been
presented the block puzzle in the research project, I can picture him studying
that block, comparing it to the others, and trying to find out why it was
different.

However, I can also picture him not engaged in the social
sticker-begging activity. First of all, I wonder if a different motivator had
been offered if the children with autism might have been more engaged in the
task. Perhaps if they had been seeking food or a toy that could do something,
they might have been more persistent than just looking to get a silly sticker.
(We have never found sticker charts to be useful to motivating Alex. However, the
reward of cash or the promise of a fun activity works wonders.)

Moreover, maybe children with autism have superior social
skills that were misinterpreted in this research experiment. Instead of
pestering the adult who was ignoring them, they gave up asking for a sticker.
Maybe they assumed that the person was busy and politely left the adult alone,
rather than selfishly pushing their own agenda. Having lived with Alex for more
than a quarter century, I have found that he doesn’t bother with people who don’t
engage with him, and he doesn’t seem to give slights, whether intentional or
not, any thought. His feelings aren’t hurt, and he instead seeks those who do
interact with him. To me, this shows a superior sense of social interaction:
recognizing those who are worthy of our social efforts and ignoring those who
ignore us.

While this research on what motivates children to explore
and explain is fascinating, we must be careful not to misinterpret the
behaviors observed in the experiments. In real-life settings, children with
autism seem to have a strong motivation to learn about the world around them.
Their responses to social experiments may not be a lack of motivation, but
rather a more reasoned reaction to rewards or people who don’t engage them. Jumping
to conclusions that they are not motivated in social contexts shows a lack of
understanding about how children with autism perceive other people and fails to
recognize that they do, indeed, possess social skills that may even be superior
to those of most.

“Intelligent people are always ready to learn. Their ears
are open for knowledge.” Proverbs 18:15

Sunday, March 5, 2017

This week, I read a terrific blog entry that offers good
advice and points for reflection. Written by special needs mom Barb Dittrich,
“4 Things for the Special Needs Parent to Give Up” shares helpful ideas
regarding how to approach the season of Lent. [To read this essay, please click
here.] As she wisely points out, “Jesus, you didn’t give your life so I could
give up eating candy for 40 days. I know you want to transform my life.” With
this in mind, she suggests that parents of special needs children give up the
following: “Beating ourselves up with guilt,” “Holding grudges against
relatives that just don’t get it,” “Expecting perfection,” and “Worrying to
excess about our child.” As I thought about her observations, I realized that
in one way or another, these ideas pertain not just to special needs parents
but to others, as well. Special needs parents simply deal with them in
different ways.

GUILT––Certainly, I need to give up unnecessary guilt. I
spend way too much time wondering whether something I did or didn’t do caused
Alex to have autism. In addition, I feel bad about the things I should have or
should not have done over the years that might have helped him. Maybe if I had
done something differently during my pregnancy or his infancy, he would not
have autism. Maybe if we had done this or that therapy or had done it sooner,
Alex might be further along in his progress. This needless guilt does nothing
to change the past, present, or future and only wears down energy that could be
spent in a more positive way. Even if I did do something wrong, Jesus died for
my sins, and I need to accept that grace and know that God has a good plan for
Alex’s life and for those of us who love him dearly.

BITTERNESS––I don’t think of myself as a person who holds
grudges, but I do at times feel bitter. As a fierce protector of my son, I have
felt anger toward those who are not as kind to him as I believe he deserves.
While most slights toward him have probably been unintentional, I have wasted
time being mad at people who have said things about Alex that I didn’t
appreciate. Moreover, I have felt bitterness that autism has caused our lives
to be untypical, and I’ve resented people who have “normal” children and “normal”
lives. My jealousy has at times kept me from seeing just how blessed I truly
am. However, Alex has taught me how not to be bitter. He doesn’t get offended
by what others say or think because he doesn’t care, and he doesn’t compare his
life to others. He’s quite content to go on his merry way, knowing that in
spite of autism, he has a pretty sweet life.

PERFECTION––I only expect perfection of myself, and I’m the
only one who expects me to be perfect. My perfectionist nature is partly
related to my guilt; I try to make up for my perceived shortcomings as a
special needs parent. Maybe if my house is immaculate and I work hard as a
teacher and I try to be the perfect mother/wife/daughter/friend, people won’t
think it’s my fault Alex has autism.Of course, that’s a foolish perspective; only God is perfect.
Consequently, I need to let myself off the hook and know that I’m doing the
best I can in a challenging situation. Nonetheless, old habits die hard, and I
will need to work at perfecting overcoming a need for perfection.

WORRY––In more than twenty-five years of being Alex’s mom, I
have worried about many things, large and small. The vast majority of those
worries never came to pass. The biggest obstacles came out of left field and
blindsided us; nonetheless, God helped us deal with every problem that has come
along, providing everything we needed. My biggest worry, which all parents
share but special needs parents fear even more, is what will happen to Alex if
something happens to Ed and me. While my concerns are valid, I know that I need
to have faith that God will take care of Alex, whom He loves even more than Ed
and I do, just as He has always taken care of him. As Jesus reminded the
disciples in Matthew 6:27, “ Can any one of you by worrying add a single hour
to your life?” Since I want to live as long as I can in case Alex needs me, I
need to stop worrying.

In these days leading up to Easter, just as I do every day
(in my perfectionist nature, of course), I will strive to be a better person,
trying to get rid of guilt, bitterness, perfection, and worry that drag me
down. Instead I will focus on the things that bring me joy (even chocolate),
especially Alex, whose unabashed joy and strong faith strengthen me and make me
proud to be his mom.

“That is why we labor and strive, because we have put our
hope in the living God, who is the Savior of all people, and especially of
those who believe.” I Timothy 4:10

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.